Fundraising Progress
Ally has grown up in the NFED community and now she’s giving back in powerful ways.
Diagnosed with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, Ally has faced many challenges, including visual impairment, missing fingers and toes, and a cleft lip and palate. She’s been through countless surgeries and hospital stays, but those experiences have never defined her.
She first started attending NFED Family Conferences as a young child. It was there, at just four years old, that Ally’s love of music began to bloom.
“At the NFED Conference, they used to do these talent shows and a bunch of kids would perform, and I sang a little song on the stage when I was 4. I think my mom was like, yeah, she likes singing songs. We’ll put her on a stage and see what happens. My older sister is also a musician, and she also sang in that talent show for the first time. So I guess the NFED was kind of where the music stuff began.”
Now a rising junior at Florida State University, Ally is studying music therapy. She hopes to use her voice and her heart to help others heal. This summer, she’s coming full circle—leading a music therapy workshop at our Family Conference and inspiring a new generation to participate in the same community that made such a deep impact on her life.
Your support makes journeys like Ally’s possible. Because of you, children and families affected by ectodermal dysplasias find hope, resources, and a sense of belonging.
This spring, help us continue planting seeds of hope and growth.
Please consider making a gift today.
With gratitude,
Mary Fete, MSN, RN, CCM
Executive Director
Donate to the 2025 NFED Spring Appeal
We’re proud to be a Thrivent Choice®-enrolled organization. Are you a Thrivent member? You now have a unique opportunity to support families affected by ectodermal dysplasias! Through the Thrivent programs, we are eligible to receive grant dollars, fee-free donations, and support from Thrivent Action Team service projects. To learn more about Thrivent’s membership benefits and generosity programs visit thrivent.com/generosity.